INTRODUCTION : SOS! A PARKIE IN DISTRESS!

Introduction
I was diagnosed with Parkinson’s Disease (PD) in July, 2008. This is my 10^th year – during that period, I have changed, physically and mentally. PD has affected my mind, my body and my soul to the extent that I am about to undergo Deep Brain Stimulation (more of this later).

I made a promise when I was first diagnosed that I will never allow PD to progress to the stage that I cannot function normally. I promised to keep myself in good shape. And I promised that I will not be a burden to family and friends.

I have failed. 

And I have failed very miserably.

There were good and sound advices which I ignored. There were fundamental, simple steps I could have followed but did not. In the final analysis, I didn't do what I should have done; and I did what I shouldn't have done. 

So there were lessons I have learned, and therefore lessons to be shared.

Dyskinesia started recently, but I hope to keep dementia in abeyance for some time to come or maybe it won't have a chance to visit given my current determination to fight it! Writing this blog will help. It gives me a sense of purpose. Still, I admit

 MY BODY HAS GIVEN IN.

Yes, sadly, my body has given in – I am weaker and slower in every respect. I need a lot of extra time and efforts to take a shower. Buttoning up can be a challenge, and changing into a pair of pants is a risky task. I could fall and injure myself. I have the scars to remind me. Putting on a t-shirt could be suffocating. Literally! Because if  my hands stopped cooperating suddenly, I end up with a ski-mask.

My body twitches  and  contorts without permission, without giving notice of intent. It rebels and refuses to follow instructions  from my thought center. I began to think of myself as a social outcast. But my thinking has changed. I used to resent been stared at as I dragged myself from place to place. Nowadays, I would smile back and if time permits, even try to engage "he who dares to stare" in a conversation so that I can tell him what I am all about. Yes, I used to be secretive about my medical condition. Today, I will tell anyone who appeared curious "I am a Parkinson's Disease patient!" 

BUT MY MIND HAS NOT GIVEN  UP. I am stronger mentally; more determined than ever. If a task seems  uphill, I will do it. If a task seems  not achievable, I will take it on. So I have to put in more efforts. Put in more time. But I will do it. Planning this blog, and writing this post, was a monumental task in itself. It would have been a piece of cake for me as recently as one year back. Not any more. Today, I could easily choke on a piece of cake instead! Literally! Even a walk in the park is no longer the usual walk in a park. But, I promise to continue looking for parks to take long walks.

Yes, my mind has not given up.  That is why I am telling this story. I felt a compelling need to share my learning and my experience with newly diagnosed PD patients and tell them of the things I should have done but didn’t. I will unreservedly also tell them of the things I did but shouldn’t have. These do’s and don’ts, believe me, will help Parkies manage their condition better. I will share my story with caregivers to make them better understand what makes Parkies tick, why they behave the way they did, because understanding the reasons make it easier to care for people like us.

PLEASE COMMENT, ASK QUESTIONS. KEEP THIS BLOG ALIVE. KEEP THE PARTY FOR PARKIES GOING!

So this is my story. It is a story  about fear, anger and denial although not necessarily in that order. It is also  a lesson about life and acceptance, the absolute need to accept absolutely whatever life throws your way. I will be the first to admit this is easier said than done.

My story is also about family and kinship, about friends and friendships. And of course, the power of love. Remember this -  the love you received, in return for the love you gave, becomes a source of inspiration, immense energy and untold power, giving you the strength to  stand up and protect the people you love. Love gives you a reason to live. Familial love empowers you to go on living for the people you love. 

PD does not kill. But it could kill a Parkie’s spirit and  that, in my opinion, is a fate worse than death itself. This is therefore also a story about fighting back, a story of hope and how it  triumphs over hopelessness. It was a long and difficult journey for me, and I have flipped flopped, became hopeful and reverted to a sense of hopelessness and back again. But once I realized that there is more at stake than just my body giving way, and my mind giving up,  that what is at stake  is actually the fulfillment of my responsibilities to the family, the dreams  I had for the children my wife and I had lovingly brought into this world, I somehow managed to find that last bolt of courage and that last ounce of strength that I  thought I no longer had. That has energized me so powerfully. And I hereby give notice of my intent to fight back with all I have got.  

All I have got, by the way, is family and friends but that is enough. I have imposed on family and I have imposed on kinship; I have imposed on friends, and I have imposed on friendships. Fighting back will help mitigate those trespasses, I hope.

Hope triumphs over hopelessness.

Finally, this is a story told with a touch of humor.  Remember, there is a reason for everything that life throws your way. If you chose to cry over it, you cry alone. If you decide to take it in your stride and laugh about it, the whole world laugh with you! Let us stop crying alone. Let us laugh together come what may.

So when my friend called and regaled me with stories of his recent European tour, I responded with tales of my failed attempt to go to Ang Mo Kio on my own. Another friend went on a  safari during a recent trip to South Africa. I was obliged to tell him how I tripped on my way to the Night Safari and didn’t complete my journey. 

Please SHARE FOR CHARITY because sponsors will donate to a deserving charity each time you share a posting with anyone. And please get them to SHARE as well. I will be posting my very first chapter shortly (Chapter 1 # "Prancing Amok with Michael J. Fox).

Thank you Anna and Howard for your donation to The Little Sisters of The Poor, Penang.

Posting 001: PRANCING AMOK WITH MICHAEL J. FOX

"Every cloud has a silver lining. Even Parkies have good days when they can count their blessings"

And today, I am counting mine! Because I am in the good company of a certain Michael J. Fox. He is a Parkie too! You should know the man - he was the star of " Back To The Future" and a couple of sitcom series. So like me, he's an actor. And a comedian. I am a humorist. 

This has to be a blessing. 

Yes, I AM AN ACTOR. According to William Shakespeare anyway. "All the world is a stage; all the men and women are merely the actors."  

A humorist? But I am! I was constantly referred to as "a joke" by all and sundry. I think they meant "a joker". I have always made people laugh no matter what I say or what I do. When I was in primary school, I was asked what I wanted to be when I grow up. I said I wanted to be a lawyer. The whole class laughed. When I was in high school my dad asked me the same question, I said "Doctor". The whole family laughed. When I met my future mother-in-law for the first time and promised her I would buy her daughter anything she wanted, the old lady couldn't stop laughing. Yes, I am a humorist too. Humorist. Comedian. Humor. Comedy. In Singlish, we say "Same same!"

In fact, the two of us have so many things in common that we are already on nickname terms. I call him "Mikey". He calls me "Mickey". Hmm..... maybe I should ask him where he got the Mickey from.

He was born on June 9. Bingo! Me too. I am the older one although I look younger. Take my words for it.

His book “Always Looking Up” was appropriately titled. Firstly, his optimism is infectious. But don't you worry. His PD is not. Secondly, for practical reasons, he simply has to look up most,  if not all, of the time because, er..because, okay, BECAUSE ALMOST EVERYONE ELSE  IS TALLER THAN HIM! Welcome to the club. If I were to write a book, the title would be "Always Looking up Too!" But I won't dwell on this.

What is important is that in his book Mikey refers to himself as a “Parkie” and it has become a term of endearment I use for people like us. We suffer from the same affliction – Parkinson’s Disease (PD).

He is a Parkie.
I am a Parkie.
We are Parkies.

PD is described as a long-term degenerative disorder of the central nervous system that usually affects the motor skills and therefore movement. And more, much more as I am slowly finding out in my tenth year as a Parkie. “Slowly”, believe me, is an understatement. When I am in my frozen state, taking a shower will require the same amount of time you would need to travel from Yishun to Orchard Road.  By bus, not  on the MRT. Parkies are slow, but not that slow.

Yes, I have plenty of blessings to be thankful for, my lively Parkinson’s Disease notwithstanding.  Yes, lively. PD has made me livelier than my age permits. When dyskinesia sets in, you could see me dancing and prancing all over in public, something I would not even do in private. Let me tell you what happened last Saturday. I was walking across via an underground tunnel and suddenly beautiful music filled the place.  My body started to jerk. Then my legs moved in directions which I didn't even know existed. And my body, my body twisted like a rubber band. The jerks and the twists and the whatnots were all so coordinated to the tempo of the music which came from the old violinist who looked at me with his tongue hanging out. A crowd gathered and crowd funding was redefined on that grand Saturday. Each jerk and each twist was met with a generous offering of currency notes and coins in different denominations - they found their way into this box carefully positioned near the violinist. Dyskinesia (another hyperlink for you) left me abruptly, just after 3 minutes and the crowd gave me an applause, a standing ovation no less. They were standing anyway. Dyskinesia may have left, but the dopamine level was still low so I inched towards the man who was by now toting up his takings, actually mine takings. He turned, smiled at me, picked up a five dollar note, Malaysian, not Singaporean currency, and pushed it into my pocket, saying "Good job! See you tomorrow same time!"

The nerve of the man. It was my nerves that did the trick. My entire central nervous system was put to work, he only provided the music. Yes, he will see me all right. He will see me when I have my own busker's licence! What a blessing! PD has given me new career choices.

Yes, I can now do moves that could make the K-Pop youngsters turn green with envy. If the timing is correct and at that very moment I happened to be  auditioning for AMERICA GOT TALENT,  Simon Cowell,  bless his heart, will hit the golden buzzer.  But if the timing is not right, and I happened to be on the MRT,  I could be  prancing all over, from carriage to carriage, entertaining the very frustrated passengers, distracting them from their woes and the incessant announcements over the P.A. system “THIS TRAIN  HAS STOPPED HERE FOR A WHILE BECAUSE THE TRAIN AHEAD HAS NOT LEFT THE STATION”. The beleaguered CEO of SMRT should be thankful for my  PD. 

I beg your pardon, but I do digress. Yes, back to counting my blessings - my forthcoming ON-OFF TEST! What? A test again? To confirm that I actually have PD? No, la, don’t be silly. That was confirmed one fine day nearly 10 years ago. This ON-OFF TEST is something else.

And it is really something else. The medical staff at the hospital will monitor my behavior after I have been deprived of my cocktail of PD medication for 12 hours. 12 hours! Would you believe it! Two hours of deprivation from my beloved medication and I would start glaring at all and sundry, spoiling for a fight. 12 hours! Hold your horses. The good people at the hospital have not gone bonkers. The on-off test is as necessary as the suffering it will cause, and the entertainment it will provide. For without this test, they cannot determine if I am a prime candidate for Deep Brain Stimulation.

Yes, my brains going to get stimulated. How many of you out there can have the pleasure of brain stimulation? Eat your heart out. Only Parkies are entitled to this blessing!

But actually, I don’t need the test. I can act out exactly how I would be behaving after 12 hours of dry season. I would either be dancing with the nurses  right in the very sanitized observation lab or I would be screaming murder and throwing accusations that the very same good people have gone bonkers. But in a soft, barely audible squeaky voice – that is what 12 hours without my cocktails will do to me. But no, they have to see it for themselves. It will be fun.

The low dopamine level might also end up with me crawling around, drooling like a baby. This happened once when I missed a dose just by one hour while waiting at the pharmacy to fill my prescription. A young mother, probably suffering from post natal blues, offered to breast feed me there and then. The busybodies at the pharmacy stopped her just as I was about to cry out "Mummy!" I will never forgive those sour grapes!

Another possible reaction to medication deprivation is that I could end up on the floor, rolling around, body contorted beyond recognition. And the medical staff may well start screaming “Wrong department! Get him to A&E! Must be a terrible road accident! Poor fellow. He has a foot in his mouth!” 

By the way, that was not  a figure of speech.

So I am grateful for this blessing - that if push comes to shove - I could earn a decent living as a contortionist. Or a stand-up comedian. But no, stand up comedians have to stand up all the time! That is impossible for  us Parkies.

I got it. I could become a contorting comedian! Now that's what I call a blessing!

Yes, allowing me to write a personal account of my behavioral pattern instead of depriving me of my much needed medication would save a lot of trouble. I get to take my meds as they have always insisted – in a timely manner and they get to assess my suitability for deep brain stimulation!  A super win/win solution.

My written report would start with the transformation of a usually mild and sober character into a loud and loud mouthed entertainer albeit with a squeaky voice.  From one who gulps down his dinner in 3 minutes flat (5 if the wife was glaring, 10 if the army of 3 off springs glared at well) to one who is still at the table after everyone had left. Even though the family was still playing "Last one off the table do the dishes”.

As soon as I am done with the dishes (in 3 hours time) I will be ready to write my next  chapter. Just pray for my medication to kick in pronto.

TIPS FOR PD CAREGIVERS :
Sadly, a Parkie's reaction and behavior during "downtime" i.e. when a Parkie's dopamine level has gone below functional level is wide and varied. Also, different Parkies react differently to low dopamine levels. To begin with, the symptoms of one Parkie could be so different from the next one. Chart out the symptoms of  the Parkie you are caring for, say, at one hour intervals from time of last dosage. You will see a pattern after some time and that will help you to provide care more efficiently.

Do yourself and the person needing your care a favor. Google and keep information on PD readily available. Refer to them constantly. Nothing is more important than to understand the behavior of the patient you are caring for and the reasons for such behavior.

My family, especially my sons, (they were 16 and 13 when I was diagnosed)  prefer to show tough love. I have stated, at the initial stage, that I will be independent, that I will do things myself and in my own time so don't give me unnecessary help. An outsider may be alarmed to see me trying to get a glass of water in my frozen state. But that was what I wanted. They will be shocked to see me lagging behind when the whole family is going out for dinner at a nearby eatery. But I don't want them to slow down for me. I do not want unnecessary disruptions in their lives. If they have to travel, please go ahead. Do not stay back on my account.

Sure, I know one of them is keeping an eye. Occasionally, one of the boys would leave a few minutes after me. I know he is watching how I walk, and watching out for me. As my PD progresses,  the family, with a better understanding of my symptoms and more knowledge about PD, knows how to deal with each situation better. They know when I genuinely needed help, when I was just being lazy! They are also more patient. Instead of saying "Dad, don't drag your feet" the elder one will counsel me "Dad, try not to drag your feet.  Walking correctly at all times, including during downtime, that is  very important. You can do it. Just remember, as you are about to take the next step, to lift your leg up and put it forward." My son, he is teaching me how to walk.

And my younger boy "Dad, the taichi coach said you didn't turn up again!" or "Dad, you have to be consistent. Go to the gym for cycling and treadmill everyday!" sometimes admonishing, most time pleading!

My daughter lives in London. Sometimes I could not resist commenting on her FB posting or jump in when  she and her partner banter  on our "Family What'sapp" chat during the wee hours. They would respond to me normally until she realized I am in a different time zone and then the admonishment will come "Dad, what time is it! Shouldn't you be sleeping? Did you take the Tryptopthan? Take it, it will  help."

She was back for 10 days recently and was obviously more indulgent, doing the little things she could. Planning things around my availability and capability, fetching things and asking constantly "You need something dad?"   

My better half, the one constantly reminding me when I am in a desperate downtime situation not to panic, "breathe in, breathe out" has done a great job of raising the kids when I was travelling  and building a career. 

My family, my pillar of support. The love of my life.

ANNOUNCEMENT: LAUNCHING OF "SOS! A PARKIE IN DISTRESS!

SOS! A PARKIE IN DISTRESS!

This is a blog for Parkinson's Disease (PD) patients, their family, their caregivers, and their friends - by a fellow patient.

This is also a forum for discussions and exchange of ideas. Please follow this blog, and SHARE!

Because for each post, we will have arrangements for a certain charity to benefit from a donation by a sponsor.

This is a useful blog, because, all said and done, PD is a mysterious disease, notwithstanding the availability of so much information on the internet. 

For the inaugural post, FOR EACH SHARE ON FACEBOOK, FACEBOOK, A SPONSOR IS DONATING US$1 (subject to a maximum of US$1000) to THE LITTLE SISTERS OF THE POOR, PENANG

The Sponsor of Post #001 of this blog (which would be together or immediately following this ANNOUNCEMENT & INTRODUCTION)it) is a very special couple, a very close family friends of over 40 years. I have known Anna & Howard Hue since I was 19. All three of us were from the insurance industry. It was Anna who introduced me to the medical assistance industry through the Founder and the then Chairman the company in 1989. I worked for that company for 22 years. Howard and I share the same birthday. We always exchange wishes on that auspicious day. Anna has been like a sibling to me all these years, keeping tabs on me, calling every now and then, just making sure I remain positive. And Howard keeps me entertained with funny stories and words of encouragement. Anna didn't know until years later that Howard was also my frequent mahjong kaki when I was in KL!

The couple is donating US$1 for each Facebook share up to a maximum of US$1000 for Posting #001  (Prancing Amok with Michael J. Fox) to The Little Sisters of the Poor, Penang.

So please read and SHARE. And get the friends you SHARE this with to SHARE as well.  Also feel free to comment and ask questions - keep this blog alive and growing!

The receipt from the beneficiary of this generous donation will be posted on this blog/FB. 

Please read, please SHARE.

Sponsors will also be secured for subsequent postings. Sponsors are required to donate directly to the Charity of their choice and post the receipts on this Blog/Facebook. Interested sponsors   please contact me.